Need VNS opinions

[bdhshakes]

Been a while since I've been on here but sometimes of the time I trust your guys opinions more than my doctors

I've moved and had to change to a new epileptologist so I'm still getting to know him, his bed side manner sucks but he seems to know his stuff. Over the years I've tried so many different medication cock tails and I tend to take a long time to get used to them so it really is a pain changing things up. Nothing has seemed to work to get my seizures under control. My new doc has me trying Vimpat and it seems to be helping. We are trying to replace depakote with vimpat. I plan to try and stick this out in hopes the new combo works (currently on trileptal, lamictal, depakote, and vimpat. )

On our second appointment he asked if I had considered a VNS. I haven't wanted to consider it before since there was a lot of medications I hadn't tried yet. But now i'm starting to reach the end of the rope, medication wise. So i'm really considering doing it. Although during some research across the web I hear a lot of the horror stories out there that seem to stem from defect devices and poorly "installed" ones.

Basically I am hoping to hear from you guys, preferably anyone who has a VNS, about your thoughts on VNS. I'm really considering it but I still want to get all the info I can. Any information or personal experiences you guys have would be GREATLY appreciated.

Oh I should mention my seizure type. I have simple partial onset seizures.

Thanks in advance! :rock:

 

[arnie]

Here's more info than you may want about my experience with the vns:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

Best of luck to you!

 

[Topcat]

Just speaking for myself my VNS was the only thing that really did much to help me

 

[1dayatatime]

I decided against it, the odds it would work were 60/40 and if it didn't work my doc wasn't going to take it out.

 

[bdhshakes]

It's been a while since I wrote this thread but I thought I would reply with my results.

I decided to get myself a VNS back in November. I am really happy I did. Not only has it been helping with my seizures but it has been great for my overall mood and energy which has been numbed down by my AEDs for years. It interrupts a seizure everytime I am able to use it during a seizure. I can't always grab it to activate the VNS, for obvious reasons, because I'm mid seizure. But it does work for me that way. I seem to tolerate the side effects of it more than others, or so my neuro says. I just get an ocassional cough when it goes off, but there is always a tightness and the hoarse voice. But after a while you get a bit used to it and it becomes less severe. But that has how its been for me anyway.

I can't say I would recommend it to everyone because I know it will be different for everyone. But I can say it has been a good decision for me and I wish I had done it 9 years ago when my old neuro originally brought it up. Thanks for your comments everyone!

 

[Cint]

bdhshakes,

I'm happy to hear the VNS is working for you. May you continue to interrupt your seizures.
BTW, I feel the same about the VNS and it works for me that way, too.

 

[Belinda5000]

bd shakes,

I'm glad the VNS works for you, I didn't have any such luck for long so It hope continues to do great with you for your seizures also.I didn't just have one seizure type.I was very reluctant to get one after a failed brain surgery.

 

[Nakamova]

Great to hear it worked for you bdhshakes. It would be nice if there were a way to predict who would do well with VNS and who wouldn't...

 

[gymrat827]

mine works for small partials. but partials with a 2nd gen. or grand mals.....nope.